A Kansas group campaigning to reduce the waiting list for services for the developmentally disabled is holding meetings and trying to build grassroots support for its effort statewide.

About 50 people gathered Thursday night at a library here to learn about the End The Wait Kansas Campaign.

Among those who attended was Steven DeCock, a 24-year-old Overland Park man with Down syndrome, and his mother. DeCock depends on her and his diminutive grandmother for much of his care.

“I don’t know what we are going to do when she gets old,” Steven's mother, Mary Beth DeCock, said of the young man’s 70-year-old grandmother.

Launched in January, the campaign aims to persuade Kansas officials to eliminate a backlog for Medicaid-funded services that currently has about 4,915 developmentally disabled people on a waiting list. About 3,225 people are waiting for any services and about 1,690 are on the list to receive additional services.

The much-sought services include home help during the workday and slots in group homes. Those on the list can wait years before receiving services, said some of the people who attended the meeting Thursday. The average wait is about 30 months, according to the Disabilities Rights Center of Kansas, a Topeka-based nonprofit group.

Among those on the waiting list are more than 800 Johnson County residents, according to campaign officials. Johnson County, in the southeast part of the Kansas City metro area, is the state’s most populous county.

The campaign is funded through a grant from the Kansas Council on Developmental Disabilities. Campaign leaders include the Disability Rights Center. The organizers said they hope to establish local steering committees in counties throughout the state in preparation for lobbying the Kansas Legislature when it convenes in January.

The delay was sought because many families with disabled children fear the insurance companies won’t be as responsive to the children’s needs. Currently, those who receive services work through nonprofit community groups called Community Developmental Disability Organizations, or CDDOs.

The successful campaign to delay that portion of KanCare proved what supporters of the developmentally disabled can do when they act collectively, said Tim Wood, campaign manager for End The Wait Kansas.

“I’m looking for real-life stories,” Wood told those who attended the meeting. “These stories are important, and I want to get the stories in front of the Legislature.”

Single mother Diana Diaz raised her hand.

Unconvinced they will get state help any time soon, she said she and other parents in Olathe are considering having a representative from each family watch their group of developmentally disabled children on a once-per-week rotation - if they can arrange the needed time off with their employers, that is.

“You can see a million holes in this plan,” Diaz said, “but we are seriously thinking about this. We have no other option.”

As for herself, Diaz said she could quit working, lose out on long-accrued job benefits and go on welfare.

“Do you really want that? Is that what the goal is?” she asked.

Dr. Betse Gage, a Leawood pediatrician, said parents must impress upon lawmakers the stress that caregiving puts on families. She was one of a few speakers who said they’d had back surgery due to injuries suffered while caring for their adult children.

Gage’s son, 25-year-old Craig Chase, had a massive stroke when he was 2 years old.

Additional Medicaid funding is not necessarily the solution to the problem, parents said.

According to Wood, the state has allocated $10.7 million in additional Medicaid funding the last two years to help reduce the waiting list for developmental disability services. But, he said, it seems to be having little consequence in moving people into services.

A little flexibility in the rules could go a long way toward helping families, parents said.

For instance, some families receive more hours of help than they need. They don’t say anything about it, though, for fear of losing those hours forever and not having them when the need arises.

So, meeting participants said, why can’t the state establish a pool of excess hours that families could contribute to – and take from – as their needs fluctuate?

Gage also suggested a tax credit for families that pay out-of-pocket for private services.

“I don’t think there is an idea out there that we don’t need to visit,” Wood said.

Mary Beth DeCock said as far as she is concerned, a solution can’t come soon enough.

She has been seeking day and residential supports since her son graduated from high school three years ago. However, she was told that he is still in the bottom half of those on the waiting list.

“It’d be nice to have this settled within the next decade,” she said.

The KHI News Service is an editorially independent initiative of the Kansas Health Institute. It is supported in part by a variety of underwriters. The News Service is committed to timely, objective and in-depth coverage of health issues and the policy-making environment. All News Service stories and photos may be republished at no cost with proper attribution, including a link back to KHI.org when a story is reposted online. An automatically updated feed of headlines and more from KHI can be included on your website using the KHI widget. More about the News Service at khi.org/newsservice or contact us at (785) 233-5443.